Invisible Illness, Stigma, and Neglect.

So I’ve had random people find out I have epilepsy and then tell me how inspiring I am for living my (normal) life. I would consider having epilepsy (in my case, as it is medically controllable) more of an inconvenience and an occasional killjoy than a nearly insurmountable chronic disability. However, I have had close friends and family tell me that they are sorry I have suffered since childhood with major depression and debilitating anxiety, but that everyone feels bad sometimes and I really need to just learn how to cope like everyone else. My guess is because even people who haven’t had seizures can see the physical harm, but everyone has felt sad or worried before, so they assume it’s the same thing and I am just being dramatic, and even close friends and family don’t see the real danger of potentially fatal mental disorders until the coroner rules it a suicide.

Additionally, there is the misconception that I have no control over my seizures, but all this (frankly, bullshit) messaging about how no matter what life throws at you, it’s up to you to make the decision to be happy. Let me tell you this – I can take a pill twice a day and not have any seizures. That isn’t true for everyone with epilepsy, so I consider myself lucky. I also consider myself a complete idiot when I forget to take a dose and end up in the ER, having yet another dislocated shoulder reduced. All of that pain is preventable. I haven’t yet found a pill or motto or diet or mantra or crystal or any other thing that allows me to prevent all those days spent internally fighting myself, crying in bed or on the floor or in the shower (if I can make it that far), hysterical over something I can’t name, fearful or hopeless about something that may or may not happen 20 years from now, or just quietly immobile because the weight of… something… is too much to face.

Yet, people are sympathetic when they hear about my ER visits. They almost never mention my medicine. Family and friends drop what they are doing to come visit me in the hospital because it is an emergency. Yet, when I call my mother or partner or friend and tell them I just really need someone with me because I don’t feel stable, that is not an emergency. I am just being too emotional. I should take a bath. I should read something. I should listen to music. All I want to do is crawl out of the confines of my skin and join the unconscious ether again, and it is everything I can do not to do it some days. I am not going to die (probably) from a seizure, but people die from depression and other mental illnesses every day.

I struggle more with depression and anxiety (lifelong side effects of another underlying condition) than with epilepsy.

Please, do the world and your friends and family a favor. Stop neglecting others because you can’t always see their pain. My inward pain is just as real, and far worse, than my physical pain from seizures or dislocations. If you would sit with them in the hospital then you can sit with them on the floor, or bed, or couch. If you would check up after surgery and see if they need anything, do the same if they share an invisible illness with you. Believe them.

And if you have a mental illness or ever feel unsafe with yourself, please tell someone. Keep telling until you find someone who will listen. Suicidal isn’t a bad word. If you feel compelled to end your life, get help. It can be hard to find, but it exists.

That’s it. Thanks.

***Note: At the time of posting, I am not currently suicidal, nor have I been since fall/winter of 2012***


Transgender Day of Remembrance

Today is Transgender Day of Remembrance, a day specifically set aside to think about and grieve for every trans person who has died due to anti-trans violence. It is not a short list of names. I am an anthropologist and a social justice advocate. I try to always be aware of my privilege in its many forms. I am always confused about gender. So today I am putting some questions out there. These questions don’t have clear or comfortable answers, and I’m not searching for resolution. I want you to know that none of these questions are meant to be confrontational or belittling of trans issues, although I certainly understand how they could come across that way, which is why I have waited so long to write them down and why I will do my best to preclude those interpretations.

Gender is a social construct, which is to say that it is a false basis for categorization and production of difference. That doesn’t make it any less meaningful. Race is a social construct too, but the world has seen wars and genocides and rampant discrimination based on race. The world has also seen rampant discrimination based on gender and sex. I’m not going to spend the time here breaking down the difference between sex, gender, and gender identity. You can Google it or click here for a primer. Sex is physically real; there are penises and vaginas and testicles and ovaries and uteri. However, even biological sex isn’t as clear cut as society would have us believe. Plenty of people are born intersex. This can mean having genitalia that is somewhere between a “normal” penis and vagina, having testicles and ovaries, having two X chromosomes and a Y chromosome, or a combination of the above. But the point is that no matter what kind of body you happen to be born with, your behaviors are learned. You have to learn how to use the bathroom, how to crawl and walk, and how to be a boy or girl.

To further complicate things, different cultures teach different gender differences. For my purposes I am sticking to the United States and a Western view of gender roles and differences. Little girls are told they are pretty and sweet and given dolls and make up. Little boys are told they are strong and manly and given play tools and action figures (or boy dolls) and Nerf guns. Plenty of families blur this in some ways, enlisting their little girls in soccer instead of dance or teaching their sons to help in the kitchen. It remains a sad truth, however, that for most items or activities one could list, another could easily delegate which sex is most suited for it. The problem comes when we assume that the biological make up of a person’s body had any impact on which of these made up social roles they feel at home with. If you are a boy who likes to cook, wants to raise children, isn’t into sports or physical aggression, is meticulous with his hygiene, and doesn’t make an idiot of himself over girls, you are most likely going to be ridiculed because you do not fit into your expected gender role.

My question is this, when does not fitting in with your assumed and assigned gender become identifying as another gender? And doesn’t this framework of being one gender trapped in the body meant for the other gender uphold the gender binary that makes you feel trapped in the first place? Doesn’t body disphoria depend on the idea that to be recognized as yourself you have to have a body that matches, which is predicated on the idea that your body could not match? What if you gender identify as something other than male or female? Are you trans? Why or why not?

I do not gender identify as female. I identify as female bodied but agender. When I was little I knew I was a boy, because I certainly wasn’t a girl. I felt out of sorts my whole life. I hated my breasts and my period (getting in the way since 1998), but I didn’t actually want to look like a boy, or be a boy. I just wanted to be allowed to act like a boy. I wonder, if I had parents that were less open minded, if I hadn’t read so many books, if I hadn’t sought out anthropology, if I hadn’t learned about the social construction of gender and learned to dismiss both boxes, would I have identified as a trans man? I don’t know.

I want to be clear. I am not looking to invalidate anyone’s identity. I am curious if trans identity would exist if we didn’t emphasize the binary and the 1:1 mapping of sex and gender, but the fact is we do. Social constructs are false premises but absolute reality. Even understanding the construct doesn’t keep me from wearing makeup to an interview. It’s what is expected of someone with my body. I’m also not proposing that trans people identify as trans because it somehow make life easier. Having a gender and sex that “match” is easy for cis people (people born that way) but it is a long and difficult process for trans people, if they even choose to alter their bodies. Nor am I blaming trans people for any of the difficulties they face. Some people might read this and think, “well they could just not worry about their gender and just be kind of weird men or women and not make everyone so uncomfortable and then they wouldn’t be threatened so much.” WRONG, on several levels. Trans people are butt of jokes and victims of violence. Before a trans person ever comes out or changes their gender presentation, they know they run this risk. Being authentic is a huge risk, but that is never their fault. It is the fault of people who are so concerned with others bodies, who are bent on policing gender, who feel that atypical is a threat. It is the fault of those who commit violence, never the fault of the victim. In the end it doesn’t matter if loosening the restraints of gender norms and binaries would result in a decreased number of people who call themselves trans. It doesn’t matter because it would surely result in decreasing the number of people who take it upon themselves to police others’ bodies with violence.

I also want to to recognize my double ignorance in the face of gender identity. Because I am agendered, I have no idea what it feels like to gender identify. I know I’m not female gendered, but I also know I’m not male gendered. I don’t know the experience of being cis or trans gendered. It’s not important to me that people use neutral pronouns or recognize that I don’t identify as female, probably because I don’t identify as anything. If I did, I imagine it would be much more important to me to live authentically. And I admire the courage it takes to live as a person considered atypical, whether you are out or not.

Lastly, I want to say thank you to those who organized the Memphis Transgender Day of Remembrance event today, and reaffirm my commitment to being consciously inclusive and intersectional in my feminism.